Feeling unsettled and a bit frustrated


#1

Hi all - I wrote awhile back about bringing my son home from his college town, which was very far away. Before he came home, I was so worried I could barely eat. I had no idea what to expect, and I expected the worst. I assumed that I was bringing home forever, although I agreed to keep paying the rent on his house so that he could return for the spring semester, if that turned out to be possible.

Since he got home, the idea of his returning has begun to seem more plausible in some ways and less so in others. On the bad side, his sleep is very messed up (this has been a problem for years), he’s still hearing voices and 3 weeks on Risperdal didn’t make any difference. On the good side, he seems coherent and reasonable, and “himself” - sort of. The “sort of” is the source of my frustration.

He’s been seen a few times by the local FEP program, which I was very excited about (him, less so). He saw their pdoc, and she said his psychosis was atypical and took him off the Risperdal. They wanted to try a program of CBT with him. I was really encouraged by this news, but more than a week has passed with nothing going on. The director had said he had another pdoc appt last Tues, but nobody else seemed to know about it, so the receptionist said she would follow up with my son. Then I went out of town only to find out when I got back that they gave him an appt for Friday and he “forgot”. I wanted to wring his neck. It’s hard enough to get this process going without him sabotaging it. The program is essentially shut down this whole week for an office move, so nothing will happen again until next week at the earliest. Meanwhile, time is passing.

He and I got into it a bit, and it seems like he’s trying to balk on the whole concept of going to therapy. His explanation was that if his normal brain was a 20, the voices took him down to about a 16, but he could learn to live with that. I was astounded to hear this. I was like, “but what if they (the program) can take you back to 20 - or even to 18? What on earth do you have to lose?” I asked if he wanted to return to school - and reminded him that it wasn’t up to me. The school gave him clear requirements in a letter this summer, which include a psychiatric test (this letter has been shared with the program). He actually did not know this. (what the hell - did he read the letter at all, or has he actually forgotten?) He said “well, why haven’t they given me a test then?” and I was exasperated and said “maybe they would have if you had bothered to show up!” He didn’t really have an answer to that.

He left the next day to visit his cousin, about 6 hours away (this visit had been somewhat planned for awhile, though no date had been set - this seemed like a good time since the FEP office is shut down anyway). I’m glad he’s getting to be around someone his own age, and to cap it off, they’ll be traveling another few hours to visit my brother and my mother over the weekend. I think all this is good for him, but it also adds to my unease - I think it’s just having him away from me again after all this time together. I started getting worried that he won’t come back (although I think my nephew will kick him out at some point - especially if I tell him he has to). Or that he’ll come back even more determined not to do therapy. But I suppose my ultimate card is that I will tell him I’m going to sublet his student house if he doesn’t participate. Because he truly can’t go back unless he gets an OK from the doc.


#2

I’m sorry for all you and your son are going through. Truthfully sz can make the sufferer very forgetful and disorganized. In addition, therapy is not always helpful for every patient even when it’s prescribed. Most importantly this illness thrives on stress, so a calm and stable environment in addition to finding the right medication is key. This disease also usually doesn’t respond to any quick fixes. It often takes trials of several medications over the course of an extended time before real stability is achieved. Each medication can sometimes take a couple of months to begin to work. Then sometimes they suddenly stop working. Navigating toward wellness takes tenacity and patience. I know how frustrating and frightening this illness is, I truly do. It’s important to remember that this disease, when active makes it virtually impossible for the sufferer to act logically and responsibly with consistency, even when they were completely logical and responsible before the illness. I took a free class that was and still is offered by NAMI (National Alliance for the Mentally I’ll) It’s called Family to Family. It teaches caregivers just about everything you ever wanted to know about mental illness and what you can often expect, what works and what doesn’t. Plus it provides a real time network of fellow caregivers (like here) that you can connect with in your local area. I highly recommend it. The class is invaluable. My heart goes out to you as you and your son move forward. Https://www.nami.org


#3

Thanks Catherine! I know you’re right. I wouldn’t say he was completely logical and responsible BEFORE he started hearing voices, either. :slight_smile: I mean, obviously that could be early symptoms, but he’s been sort of odd his whole life. It is hard to separate out (a) his inherent, somewhat obstinate personality, (b) the normal reactions of a 21-year-old male and © the disease.

And I know I shouldn’t expect miracles or anything. I’m not sure about his going back to school just yet, but the FEP program was willing to work on that as a reachable goal. Also, I’ve been reading that if all possible, it’s better for them to have something concrete to be working towards. He’s become somewhat obsessed with the stock market and has read a lot of books on trading, etc while he’s been home - that has kept him somewhat busy - but it’s not the same as taking classes and all. I’m just not sure what’s reasonable.

I think I was just feeling unsettled having him away from me again, after having him home for a couple of months.


#4

I concur with @Catherine on the NAMI Family-to-Family class. Continue to learn about this illness from reliable sources. While those of us on this Forum have first-hand experience with a loved one with Serious Mental Illness, most of us are not experts. I have read that the earlier you can intervene and help the person get treatment, the better is the outcome statistically. That being said, this is hard to do when the person is still somewhat functional and does not see the need for intervention. But the more you learn now, you can be better prepared to help him now AND down the road.


#5

I’m sorry for the stress and worry you are going through. My son is 19 and I could relate a lot to your post. He is in a half day welding class at a community college somehow hanging on to a passing grade but I worry all the time about what could happen. We are switching medications as we have yet to find the right med for him. Just when I think he has a somewhat normal day then the shoe drops and he has a day like today where he leaves class an hour early but I have no real idea why, he seems zoned out in his own world and I can tell he is hearing voices. Normally he is very therapy compliant but tonight I got the “I want to live on my own” card. He clearly is not ready for that yet and needs to get stabilized. I’m so worried that we will never find a medication that will work. He drives and I worry all the time if he is stable enough for driving. He is a great driver but sometimes with this illness you just never know what is going on in their head. I worry all the time about what the future holds or if he will ever live independently. If you ever want to chat via the phone email me for my number - avidreaderamy@comcast.net


#6

I think my fear is this - this summer was the probably the worst time of my life, constantly worried about what he was up to, and whether he was even still alive. He would go days without talking to or texting anyone, and not apparently leaving the house (I was guessing this from afar, tracking his phone, etc, because he wouldn’t talk to me at all). Then I got him home, and by some miracle into this awesome program that’s literally 10 minutes from our house. I felt enormous relief - I could relax a little, given that there was a whole team of professionals ready to help him - and then he sits there and says he doesn’t need their help. I don’t think he’s 100% serious - he tends to throw out statements like that as a trial balloon sometimes, and then backs off. But it’s a reminder that this battle is never really going to be over.

It was weird with the Risperdal. I know it doesn’t always work right away, but I didn’t really see any change in him at all, positive or negative - appetite, sleep, etc. He said he couldn’t tell any difference wrt the voices. I asked him if he’d be willing to take something if it did work - or would he rather live with the voices. He said it would depend on what else the meds did to him, which seems reasonable enough.

As far as going back to school, I think it’s a reasonable goal. I don’t know if going back in the spring is the best idea, but if he can get a pdoc to sign off, I’m willing to let him try (I’m afraid he’s going to go … crazier? … if he just hangs out here for a whole year). I do know on some level that he may need help for the rest of his life. I just don’t know what shape that’s going to take. It’s not that I don’t want him here - but I don’t want him to feel like he’s living in a cage, either.


#7

I sure hear you. For several years I thought - is he alive or dead? I have been very fearful and worried. Finally, a week or so ago I have decided to tell myself everything is going to be good going forward (my son is on invega but will go off it in the near future so he has told me). Everything will be just fine and I can’t change it. I just have to remind myself that I did everything I possibly could to help him and there is nothing more I can do. That being said, he has a court date tomorrow for a year old speeding ticket and of course I’m nervous about it.